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My new LymphaDiva sleeves came in, so I picked them up on my way to the Cancer Center (more on that appointment in a later post). The woman I’ve been working with at the Pennsylvania Artificial Limb and Brace Company (yeah, it’s a mouthful) has been extremely helpful and knowledgeable about what’s available to help a breast cancer patient.

First, we tried on the sleeve.

The Flutter LymphaDiva sleeve and gauntlet

I’m pleased with the pattern choice I made. I also got a plain beige one to wear under long sleeves, but I wanted to try on the pretty one first. I had help putting it on this time, and I’m sure it will be much more difficult to do on my own since it’s so snug. I got the small short sleeve and the small gauntlet (for my hand). The sleeve itself isn’t too noticeable when I wear it, but the gauntlet makes the muscle in the ball of my thumb cramp up. I might wear the sleeve around just to get used to it, but there’s no way I’m wearing the gauntlet unless it’s absolutely necessary.

Since I was there, I mentioned to the assistant how lop-sided I am after the final fill on my expander. It’s going to be months before I get the expander exchanged for the implant, and I was wondering if there was anything I could do to even things up. Turns out there is. I can get a breast form to up the size on my left breast so it matches the expanded right side. I can also get a partial form for the right side so there isn’t quite the drop off on the underside of the breast. If I’m going to go in that direction, I probably want a mastectomy bra to hold the forms in place as well, so I’ll have to go back for a fitting and to pick out a style that will work without irritating my port.

Oh, and while I’m at it – check out the hair!

Look – there’s hair!

It feels like real hair, finally, and you definitely can’t see my scalp through what’s come in. It’s even long enough to stick up occasionally! I’m still waiting to get to the point where I can style it, but at least it’s enough to keep my head warm around the house now.

Goodness, when Dr. Kang mentioned the expansions get more difficult, he wasn’t kidding. I did take the Valium before I went, and I couldn’t even tell. There was a fair amount of grunting in pain as the expander was filled and I really wondered if I needed the full 100ccs added. I did take pictures this time, so let me walk you through the procedure with visuals.

I go into what I call “the expander room” since that’s all that seems to happen in the room.

The expander room with the hot, bright lamp.

I’m not sure what the machine in the corner is, but Dr. Kang uses the light over the bed. When he turns it on, it’s noticeably warmer where it’s shining on me. After I’m escorted into the room, I get to put on the vest.

My high quality vest

It’s got two snaps and it’s sleeveless. Unfortunately, the room isn’t very warm so I try not to shiver too hard while I’m waiting for the doctor. Shivering uses chest muscles and using chest muscles hurts. Once Dr. Kang comes in, he finds the port for the expander using this device:

The magnetic dousing rod. The silver part is a magnet.

Once he finds the port, he accesses it with a needle:

The access needle

I realized when I took the picture that this is a looong needle (everything below the green device is needle). I’m not sure if the whole thing gets put into the expander, because I won’t look. I get a little woozy when I see needles hanging out of my skin. Dr. Kang then attaches a large syringe.

He fills this twice from the saline bag and pushes the saline into the expander.

This is what 100ccs of saline looks like, with a pen for comparison.

I know 100ccs doesn’t look like much, but oh did it hurt. The pain was much more intense in the muscle under the arm this time, although the pain across the chest was there as well. In fact, the pain radiated all the way around to my shoulder-blade. Just taking too deep of a breath hurt badly, let alone moving my torso. And let me tell you, those chest muscles get used a lot just existing, and trying to sit or lay down, or anything else you want to do.

I had to up the ante on the meds and add pain meds. The Valium alone just didn’t cut it. In fact, the pain woke me up every four hours overnight when the hydrocodone wore off. Sadly, I discovered this morning that taking pain meds on an empty stomach is a bad idea. I woke up slightly nauseous and light-headed. I ate a bit of breakfast and then crashed on the couch for two hours. That was enough to return me to the land of the living. It’s not exactly comfortable, but at least I’m down to manageable pain instead of excruciating pain.

I am so glad that’s the last expansion, and didn’t decide I wanted to be bigger. If I was on the typical schedule and undergoing chemo at this point, I would have been able to split that last expansion into two, but since I’m supposed to start radiation stuff next week I need to be done with the expansions. The skin doesn’t expand well after radiation (it gets a ladder-like appearance, apparently). It doesn’t heal all that well either, so I’ll have to wait a couple of months after radiation is over before I can get the expander removed and the implant put in. Being lopsided for months won’t exactly be fun, but at least the pain of the expansion will go away soon.

Yesterday was my second expansion from Dr. Kang. I was a little more prepared this time (I was not in any way expecting the first expansion last Friday) so I came with questions for the doctor. He’s not great at small talk, but he’s very good at answering questions I might have.

The procedure goes as follows: I change into the vest (I’ll have to take a picture next time I go) and lay flat on the table, with my arms at my sides (which is surprisingly hard to do. I actually tucked my hands under my body just to keep them where they belonged). Dr. Kang searches out the fill port on my expander using a little magnetic dousing rod suspended on a circular device. The needle goes in my skin (I feel just a little prick – apparently I still have pain receptors in that part of my skin, even if I don’t have touch receptors) and he pumps 100ccs of saline into the expander.

The first time, I didn’t really feel anything until Dr. Kang was at the second half of the expansion. This time, I noticed the fill much sooner. Good thing he warned me each subsequent fill is more uncomfortable or I would have worried something was wrong. As it was, I decided it was time to fill the Valium prescription he’d given me last week. I needed all the muscle relaxation I could get. As it is, any time I cough or sneeze, I really wish I hadn’t.

I did ask why the expander is put under the chest muscle, since it causes so much of the pain. There are two reasons. The first is just to provide more coverage over the expander. If there’s a problem with the skin healing, at least there’s a layer of muscle between the expander and the outside world still. The other reason is that muscle has a better blood supply than skin, which reduces the chance of infection, which is always a worry when you add something to the body.

It’s 24 hours out from the expansion and I feel much better than I did last night. The giant grapefruit under my skin isn’t exactly pleasant, but at least I don’t have constant chest pain because of it. I’ve got one more expansion scheduled for next Thursday. I may take the Valium before I even get to the doctor’s office this time so I’m a bit better prepared for the pain.

Last Thursday, I met with the oncologist and the radiologist. Dr. Li’s visit was really just a check-up. I had gotten blood drawn the day before so he could check my levels. Everything was back to normal – no anemia, liver enzymes were back within expected ranges, and even my iron levels were good. We did talk briefly about whether or not I would benefit from taking hormone therapy (something like Tamoxifin). The tissue from my lymph nodes was weakly positive for progesterone, which means I’ll get a minor benefit from the drug. We decided to try it (after radiation is done) and see how well I tolerate the drug. If the side effects are too bothersome, I can stop taking the drug.

The big meeting was with Dr. Figura so we could discuss what radiation would entail. Once again, the particulars of my case are causing difficulties. The normal sequence of treatment for breast cancer is surgery, chemo, radiation, and during chemo you do all the reconstruction. Having already done chemo, I don’t have that window of time to fill the expander and apparently, skin doesn’t stretch as well after radiation. Once I start radiation, I can’t make any changes to the size of the expander either since it changes the geometry of the area being irradiated.

I didn’t realize it would be such a problem. I know Dr. Engel had mentioned that reconstruction would be difficult after radiation, but I will admit I kind of ignored him. Dr. Figura and Dr. Kang talked about the case and were able to come up with a viable plan that wouldn’t push back the start of radiation too much. For once I’m happy I’ve got a small chest size since that means I won’t need too many fill sessions. In fact, with the first fill the very next day, I’ll be done in two weeks with two more 100cc fills. I’ll be carrying a giant boulder around on my chest while undergoing radiation, but at least we can get it done beforehand.